Purple Canaries

Joyce Gould with Jill Gould

Acute Porphyrias Patient Odysseys

PORPHYRIA EXPERTS: FOR SOCIETIES’ SAKE…STOP DISMISSING, GASLIGHTING AND ABANDONING DESPERATELY ILL ACUTE POPHYRIA PATIENTS! Day 1, Purple Canary 2021 National Porphyria Awareness Week Commentary

“What we have here is a failure to communicate.” This classic line from the American film Cool Hand Luke exemplifies the alarming and capacious disparity between information provided by certain acute porphyria experts and what doctors and patients need to know in order to make informed medical decisions. For decades, these experts have (willfully, it […]